November 4, 2014
Mom reached for her lamp in the night and fell out of bed. It was a little after 4am. Adam heard her calling and helped her back to bed. He recorded a half milligram of Ativan and an unusual three pumps from her pain meds.
When I go into her room at 8a.m., she says, “I’m feeling a lot of pain from my leg. And I’m dizzy.”
“I’m sorry, Mom.”
* * *
She is irritable this morning. I hear her tone of complaint. It’s always been hard on me.
* * *
“I should get outside today,” she says, “don’t you think?”
“Sure, if you want to, Mom.”
“I need to take better care of myself.”
“You’re doing the best you can.”
“I just don’t know what to do anymore.”
* * *
She wants to call her bank because she has been convinced that she paid a doctor’s bill that she keeps getting in the mail.
“They’re probably not open till 9,” I say.
She looks at me. “It’s not 9 yet? This has been a long day.”
* * *
“She shouldn’t leave today,” Mom said, breaking into tears. She’s talking about Muschi. “But I know she has to watch her grandkids.”
Muschi brings mom fried potatoes and eggs. Mom begins to eat, and then to cry. She pushes the food around on her plate. I reach out to clasp her shoulder.
“I can’t do this all day.”
“Do what, Mom?”
“Watch her leave.” She looks at Muschi. “We’ve both been through this many times. We know how this goes.”
“Every time I’ve said goodbye to you,” Muschi says, “I’ve seen you again, and this time is no different, honey.”
* * *
I suggest that Mom turn over on her side, so as not to put stress on her bedsore.
“Which way?” she says. She speaks slowly, and a bit thickly, like a child just awakened.
“It doesn’t matter,” I say. She begins to roll to her right side, groaning a bit as she does so.
“You can put a pillow behind her,” the hospice nurse says.
Mom turns her head toward me. “You stay here,” she says.
“I’ll just be your bolster,” I say. I climb onto the bed and support her back with my body. The hospice nurse is delighted. My right arm goes under the stack of pillows and my left rests on Mom’s arm. She dozes. I work on being present. Mostly asleep, she says something about a fairytale. “A fairytale, Mom?”
“He dies in the end,” she says.
We all die in the end, I think.
She is so fragile. So scared. I cannot but weep unobtrusively.
In the living room later, Adam surprises me by opening his arms. “Come here,” he says.
The instant we embrace my body begins to shake, and for the first time in my life I cry on a man’s shoulder, and his hug just goes on. His eyes are wet.
I sometimes find myself wondering how I will manage during the period after her passing. Will I be able to work? I think I will just leave the house empty until spring, no renters, and then sell it. The work that needs to be done on it overwhelms me.
* * *
“I love you, son,” Mom says.
“I love you too, Mom.”
“More and more,” she says. “Not less and less.” She is silent for a moment. “Amazing how that happens.”
* * *
In the late morning, Adam and I look into flights, prices, and frequent flyer miles to get my sister, who lives in Alabama, back to Colorado.
Adam and Muschi hatch the idea of bringing in a proper hospital bed, one with air sacs that are supposed to alleviate her bedsore. It is delivered just before noon. Mom’s German friends Monika and Inge come as well, and talk to Mom. We have the bed installed in the living room – with a couch on either side for visitors, and the TV straight ahead so Mom can watch her German TV shows. The air pump that circulates air through the sacs is quite loud. I take it off the metal bedframe and sandwich it between two pillows, where it can barely be heard.
* * *
At around noon Muschi goes into Mom’s room to say goodbye. “I will see you soon,” she says. “I love you.”
“I love you,” Mom says, groggily.
“I love you so much,” Muschi says. She caresses Mom’s face and hair.
“Just go,” Mom says, not unkindly. She always preferred just to be dropped off at the airport curb, to avoid all the long goodbyes and drama that go with accompanying a traveler inside.
They say goodbye again, these two women who have been best friends since 1948, and who came to the United States at almost the same time, and Muschi departs.
* * *
My good friend Tedd writes me from D.C.:
i send you a big hug. cried again when i saw your mom’s pic with you. it’s so hard cam, i am really sorry you and your family are going through this. always your brother, tedd
So many people have written so many nice things, some by email, some on Facebook, and some in the comments on the blog.
* * *
Mom’s legs bear some weight today, but she still began crying as we came back from the bathroom. “I can’t even be dignified,” she said. She is now in her hospital bed, which we’ve put in the middle of the living room.
“You’re plenty dignified, Mom. Courage and grace personified.”
She gave me a skeptical look.
* * *
She is upset that Pumpkin doesn’t come to her as before. I know her well enough to suspect that she is wondering if Pumpkin senses something changed in her. What she says is, “It’s too much change.” She pets him and cries more than I have seen her cry.
“I’m just having a little falling apart,” she says.
“Don’t you worry about that, Mom. You have every right. I’m surprised you’ve not done it more.”
Somehow, my nephew Dylan materializes. He hasn’t contacted Mom since he moved out of her house about four months ago. She hears his voice as he comes in the back door. “I’m not ready for this,” she says. But he is here. She hears his tales of financial and legal woes and I catch what I think is impatience. He does kiss her on the head and tell her he loves her as he leaves to go to his second job.
But before he leaves, Mom says, “I don’t know how to do this. This has been such a horrible day. Muschi left. I can’t walk . . . I just want to go to sleep.”
Did she literally mean to sleep? Or something more final? “Whenever you want to do that,” I said, in either case, “you just go ahead.”
Not long after, she asks for another Ativan, sooner than usual, because she literally wants to sleep.
* * *
In the mid-afternoon, Mom has a hankering, she says, for steak and broccoli and zucchini. Adam goes out to buy these things and then prepares them. As a cook, Adam is very enthusiastic. The meat, though expensive, turns out not to be very good – not Adam’s fault – and I’m still hungry.
“I’ll fix you something,” Mom says.
“You’ll what?” Mom hasn’t been able to stand up to cook in the kitchen for over a week now. Cooking is one of the many basic pleasures she’s been denied.
“Help me up,” she says.
So we actually shuffle into the kitchen together, and Mom goes to the refrigerator, bends down to rummage around, finds chicory roots and yogurt, and somehow stands up long enough to slice up the chicory — and make a chicory salad with curry, olive oil, and garlic. I’ve had this before from her, with sour cream in place of yogurt, and it’s surprisingly good. The soundtrack to “Rocky” may as well have been playing in the background. To sit up, to get out of bed, to shuffle and stagger to the kitchen, to bend down and push and lift, to stand and wobble and cut and pound, to stretch toward a high shelf and carry, to stir, to shuffle and stagger back to bed, to get into the bed without much use of legs – she may as well have been competing in a decathlon. If her goal was to rage, rage against the dying of the light and do what she loved, she succeeded.
* * *
I know she has a lot of life left in her because she can still annoy me.
This reminds me of a Facebook comment by my sister-in-law Jannilynn’s mother, Linda. When Linda visited a week ago, she spent a good deal of time massaging my mother’s feet. In her comment, she said that she could tell from touching my mother that it wasn’t yet time.
November 5, 2014
I was wearing my ear buds last night, watching TV on my laptop, and didn’t hear Mom calling for me. Note to self. Adam eventually heard her, and helped her to the bathroom and back. We were both up again in the middle of the night with her, and as I was stirring in the morning I heard her hiccupping – three or four times, five or six hiccups each. And sure enough, she then started to vomit. Adam was holding the bag when I came out to help. She cried. When she was done she felt dirty, wanted all the sheets cleaned, wanted to brush her teeth and use mouthwash, wanted a bath.
“I feel like I’m walking into this strange place and I don’t know what’s going on or what to do. And I’m doing it all alone.” She wept.
* * *
Getting to the bath, and into the bath, and out of the bath, and dressed, and back into bed, was a trial. She seemed in constant pain, and it took great effort to move in small ways. “I just wish I could go to sleep.”
I wasn’t sure I heard her. “What, Mom?”
“I wish I could go to sleep. If it must happen, I wish it wouldn’t be prolonged. I just want to go to sleep.”
So maybe that’s what she had meant yesterday, when she said she just wanted to go to sleep.
“I know, Mom.”
As she was getting back in her hospital bed she said to me, crying again, “I don’t want to do this.”
“I know, Mom.”
She curled into a fetal position and wept quietly. Tears ran down her face. There is nothing harder to watch. I leaned over the bed railing and hugged her.
“When’s the last time we clicked my pump?” she asked.
“It doesn’t matter, you can do it whenever you want.”
“Click it again,” she said. “I don’t want to feel anything. I don’t want to feel mad, sad, glad, nothing. I just want to be nothing.” I pressed the delivery button on the pump’s bolus. She had already used her glass pipe after her vomiting. Now I offered her my vaporizer. The marijuana would reduce her anxiety, and help her to sleep, and even help to prevent further nausea.
She had just taken a few draws on the vaporizer when Rob came by. Rob is Mom’s neighbor, the one who rolls the joints, and takes out her trash, and drops by to check on her.
As he walked into the living room his eyes took in her hospital bed. “Wow,” he said. I sort of hoped he wouldn’t do that. “You’ve got your own hospital bed and everything. Not doing too well?”
“Not worth a crap,” she said. “You’ve sure been gone a long time,” she said.
“My back has just been killing me,” he said. Rob had recently had back surgery. “I thought I had problems walking,” he said. “I’m sorry.”
“Light one up,” she said. “Let’s share one.”
So they did. Adam, who had begun to nap in Mom’s room before coming out to meet Rob, went back to sleep.
“It may have been a dream,” Mom said, “but I dreamt I was in a tub of pot water.” In a sort of fog now, she asked if there were any good movies out on Netflix or RedBox or at Hastings Books and Video. “I want to see a good movie,” she said. “Not weird, not heads chopped off, not muscles growing out of weird places.”
After Rob said goodbye she lay back and closed her eyes.
To sleep, perchance to dream.
* * *
In an email a few days ago, Julio had said he hoped I would soon share good news. I told him I wasn’t able to do that. He wrote back this morning.
My spanish , my pseudoenglish aren´t good enough to express feelings
Only one thing i can tell you, Courage !
The fact that things like that happens, makes my “ faith “ collapse…
I insist, Courage !
Mom awoke from her nap and turned on the TV, she said, to get her mind off things. I was putting on my shoes to hang out the wash when she said, from her hospital bed, “I didn’t know I would be so incapacitated. I thought I could do stuff. Slowly, carefully, but I thought we would still be able to do stuff. Now I don’t even know where I am.”
* * *
7:52p.m. Mom is sleeping. She is losing the use of her legs, and feels pain in them. That may be due to the retroperitoneal tumor pressing against her spine and other nerves. I think a doctor told us this could happen. She is on constant pain drip, and must take Ativan around the clock to avoid vomiting. And today she vomited in spite of the Ativan. As it has been for over a week, the vomit was greenish bile. The hospice nurse says that may just be her liver giving up, and she may be switching to liquids-only pretty soon.
Yesterday and today Mom said what was previously unthinkable: that she just wanted to go to sleep and not wake up.
Her desire to end her suffering is finally starting to outweigh her will to live. And that is becoming my feeling as well, but more slowly. Because I’m not the one suffering, I can’t know how to properly weigh the pros of the longer life with the cons of the terrible psychological and physical suffering that life requires.
But I do know that the more time I spend fearing the end, the less time I’ll be spending with my mother.
* * *
At 8p.m. I walked into her room. “Mom,” I said. “Mom. I need you to take your Ativan.” She did not open her eyes. She just opened her mouth. I put the pill in her mouth and still without opening her eyes she drank water from the bottle I held to her lips. A few moments later, she groaned. “What is it, Mom? What hurts?”
“My butt,” she mumbled, meaning the bedsore.
Nothing to be done about that. I had already applied a marijuana and coconut salve. She whimpered again. I stood there for a moment, watching her, and then walked around the bed. I got up on it and put my head against hers.
Look at her hands, crossed over her abdomen. Inscribe them on your memory. They are thin now, fingers slender, the left one looks older, in this light, than the right one, which looks smooth. My right hand lies atop hers. These are the hands that have lovingly made me many a meal. They’ve caressed me and patted me on the shoulder or the side of my head. I take in her clavicle and collarbone, more prominent now, but familiar, a part of her I must have seen thousands of times without registering what they looked like.
I start writing in my head, and then I think about the fact that I’m writing in my head rather than being present with my mother, and then I’m reminded of Natalie Goldberg, in Writing Down the Bones, relaying the story of how her Zen master had told her, “Zen or writing. You can pick only one.” Which affirmed for me that writing is a form of meditation.
Pay attention. Be here now. See and hear her breathing.
I then began thinking again, this time about the two little books hospice had evidently decided it was time to bring and casually leave lying around. The books listed the symptoms that tell you someone is likely to die in one to three months, and when they’re days to weeks away, and when they’re hours to days away. Specific changes in breathing that I didn’t commit to memory apparently happen near and at the end.
She’s still breathing.